When time isn't promised...

Not all diagnoses are created equal.

Some, like cerebral palsy, come with a wide spectrum of possibilities. It’s called an “umbrella diagnosis” a catch-all that stretches over children who will live long, full lives, and others whose journey is far more complex. For many of us, it means a lifetime of therapy, advocacy, and adapting to a world that was never built with our children in mind.

But some families receive a diagnosis that doesn’t come with hope for the future. It comes with a timeline.

My son Kaedyn lives with cerebral palsy. His life is layered with challenges, appointments, and uncertainty, but he is not terminal. We still get to plan for years ahead. His best friend doesn’t have that same future.

He lives with ataxia telangiectasia, or A-T a devastating, degenerative illness that strips the body of function over time. It weakens coordination. Slows speech. Steals mobility. Compromises immunity. And eventually, it takes away the most basic abilities: eating, breathing, even fighting off a simple cold. Most children with A-T do not live into adulthood. And there is no cure.

And yet, you’d never know it watching them together. Kaedyn and his best friend play and laugh like time doesn’t exist. They trade wheelchair jokes. They argue over Minecraft builds. They talk like they’ll be friends forever—because to them, they will be.

But for us, their mothers. Forever feels so painfully fragile.

I’ve worried, quietly, deeply, about when and how to have that conversation with Kaedyn. About what it will mean when one day, his best friend isn’t here anymore. About how to prepare a child for loss without stealing their joy. And all the while, my best friend, his best friend’s mum guards her son like a lioness from the weight of that truth. From the clocks and calendars. From the knowing.

There is no right way. You can be prepared, or you can be completely shattered in one breath. I still don’t know if there’s mercy in knowing. Or if not knowing is the greater kindness.

There are milestones his friend may never reach, not just the big ones like graduation or moving out, but small sacred ones: riding a bike, blowing out sixteen candles, getting his first heartbreak. And still, his life is full. Because she makes it full. Because she refuses to let A-T define every breath.

We are raising our boys side by side. Two mothers. Two best friends. She walks a line between hope and heartbreak. And I hold gratitude and guilt in the same palm.

We share waiting rooms. We share dark humour. We share celebrations and silent grief. And somehow, we hold each other up, even when we’re both crumbling.

There’s no guidebook for this kind of life. Just instincts. Just love. Just the deep knowing that time is both a gift and a thief. And that whether you get twenty years or fifty, what matters most is how much life you pack into the days you do have.

So when you meet kids like Kaedyn and his best friend, don’t look away. Don’t pity them. Don’t tell us how strong we are.

See them.

See the boy who is terminal and still laughing. See the boy beside him who will one day ask where his best friend went. See the mothers who are already mourning what hasn’t happened yet and are fighting like hell to make joy the thing their sons remember.

We don’t all get time. But we all deserve to feel like we lived.